Vincent updates his MDS journey with humor, insight and optimism
Vincent Rogers of Storrs, Connecticut was profiled in the Spring 2004 issue of the AA&MDSIF Newsletter. Here, he reflects on his survivor’s journey with humor, insight and optimism.
It's 8:00 am. I am wheeled into a large windowless room on the 7th floor of Manhattan's Memorial Sloan Kettering Hospital. I have aplastic anemia and I have come for treatment.
I'm scared. My Doc says there's about a 60% chance the procedure will work; thus 40% that it won't.
A maze of tubes connects me to mysterious devices that click, tick, and buzz. A group of perhaps ten Residents and Fellows sit quietly in a gallery opposite me. All of the seats are full - a sellout.
Everything has been explained to me. I'm to be injected with a serum called ATG. Theoretically, it kills the bad cells that are keeping my bone marrow from generating healthy ones. If all goes well, new cells grow and I am cured.
But ATG has its downside. Within 30 to 40 minutes I must expect vicious symptoms that would make an ordinary case of the flu seem like a sneeze.
I lie there quietly, doing my best to be a good patient. The serum begins to flow into my veins. There's a wake-like silence in the room, and I'm counting seconds. 45 minutes under these circumstances can be a very long time; a form of torture to do the Inquisition proud.
What to do? Can't just lie here - but can't go out for coffee either.
Minutes go by. This is driving me nuts.
"OK, I was born in Jamaica, New York, December 9th, 1926."
No response. (Understandable.)
"My dad was a pharmacist, my mom a legal secretary. We lived in a railroad flat above the store."
Smiles here and there.
So far, no effects from the serum, so I carry on.
"My dad was a horseplayer. He'd take me to the track whenever he could - God, I love horses - that's why I'm getting ATG.” (An inside joke.) Knowledgeable nods of agreement from the assembled medics. The serum is partially derived from horses.
My monologue continues. I tell them about Doris, the lithe, tawny-haired, unrequited love of my high school days.
The stuff begins to kick in. My eyes burn, water. My legs ache and the trembling begins. My body twists, turns. I am miserable. The ATG now takes over.
Three days later I am sitting up in what amounts to a private room, since no one occupies the second bed. I have a spectacular view of the Williamsburg Bridge. My kids have all come to visit their dad, and even though I'm hooked up to half a dozen devices, I'm able to get up, walk, and even shower.
I have a long, tender, tearful conversation with my wife, Chris, who, a victim of Multiple Sclerosis, is unable to manage the 150-mile trip from Storrs, Connecticut, to New York City.
I receive two or three blood transfusions, since it is far too soon to know whether or not the ATG has done its job. But I am free of "the flu" and feeling well enough to ask one of my nurses to search out a copy of the Daily Racing Form; the paper that devotes thirty or forty pages each day to horse racing news, and, happily, one short paragraph to everything else.
I'm visited daily by my doctor. He’s a great guy, but very noncommittal about my condition. My platelet counts are OK for now, but it will take weeks before we know if we've won or lost.
After seven days I'm released from the hospital. My counts are an adequate 25,000 (250,000 is normal!). My son Evan, whose blood now runs in my veins since he was one of my donors, drives me home 150 miles north on the Merritt Parkway and beyond.
Now begins a weekly ritual that is to last for months. I must go to Sloan Kettering once a week for blood tests. I'm not yet well enough to drive, so friends help me out. They drive me to Stamford where Evan lives, and he then navigates the New York City traffic as we motor to the hospital on New York's Lower East Side.
Evan and I somehow get through the maze of city traffic, find the parking garage, the elevator, and then emerge on the 7th floor. I register at the reception desk, and then Ev and I sit and wait. Soon my name would be called and my blood tested by consistently caring technicians who knew that anyone being tested at Sloan Kettering was dealing with something serious.
Now the tension mounts. I wait, sometimes for an hour or more, for my name to be called. I am now to see my doctor. There it was, at last - Vincent Rogers?" I leave Evan and go to a small examining room. A young intern or resident weighs me, takes my blood pressure, and checks my heart. He tells me the doctor will be in shortly, and leaves.
Mind games begin; what will the count be? Will it have gone up? If so, the prognosis is good, at least for now. If not...
I listen carefully for corridor sounds. I hear laughter, small talk. I listen for footsteps; here he comes - no, whoever it is walks right by. Will he ever get here? Fifteen, twenty minutes go by.
More footsteps - they pause - the door opens and the doctor appears. Before he speaks, I study his face looking for clues; a smile? a half-smile? A frown?
The good doctor shakes my hand, tells me the count increased to 35,000. He is obviously pleased, a good sign; I am elated.
I find Evan, we leave the hospital, and dial Chris's number on Evan's cell.
"Hi - we're on our way home - the count went up!"
She is so happy she can barely speak. She wants me well, of course. But there are two lives at stake here. I need to be well as much for her as for me.
The weekly tests continue for two or three months. The procedures were always the same, as was the tension. The counts climbed steadily and, as I write this at age 84, twelve years later, the tension has eased.
My local doctor always mails me a copy of my blood test results after my annual physical exam. When I see that envelope in the mail, a little of the old angst returns. I rip it open, ignore most of the numbers and search out the forever vital platelet counts. Again, normal. I am alive.
Update - It has been several years since Vincent received his ATG treatment and he's had no treatment since. A lot has happened in his life since his battle with aplastic anemia.
He lost his wife, Chris, to multiple sclerosis fourteen years ago shortly after receiving treatment. At 86 years old, he has three "incredible" children, six grand-children and four great-grandchildren. His son, Evan (mentioned above), is a music writer and producer who signed the singer Rihanna to a contract.
"I guess I'm doing pretty well," says Vincent. He plays trumpet and flugelhorn with a group called "Jazz Alive" and continues to handicap races and ride his bike.
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